The chronicles of a man with cystic fibrosis just trying to live a good life.

October 31, 2013

Gold Stars

Pulmonary rehab Day 18.

Let me just first say that it was nice to be able to scope out 7800 as an outpatient first, rather than having my first view of it being from inside a tangle of tubes and wires. That will come soon enough. But for today, it was nice to meet a couple of nurses and at long last meet Christy Hamilton. I brought her a coffee (outside coffee being to hospital coffee what a Sportster 1200 is to a Honda 250) and we ended up chatting for over an hour. Hated to leave though; Christy is fun to talk with! I left feeling like we'd both earned a gold star; her for battling through her current health issues, and me for battling through the corridors from Clinic to Main with an e-tank so I could bring a friend a coffee. But I finally HAD to leave to get back to rehab, where I had begun my day but had to finish!

Speaking of which, that went well, as usual. Weights: check. Always adding reps or, once I've reached 25, adding weight and resetting the reps to 12. Getting stronger. Bicycle: awesome. Kept it on resistance level 3 the whole time, went 4.2 "miles"; a new personal best. Of course, nobody really notices when a pulmonary graduate notches something better, because they're not keeping a close eye on our charts. Oh well. I'm far too old for gold stars, aren't I?

But they do give out stars! At least, I noticed that one of the therapists, upon checking out post-transplant patient Rudy (who is setting a very high bar for everybody), penciled a star by how many laps he walked in 20 minutes today - 24 laps, or 1.2 miles. Bravo Rudy!

I, of course, took that number as a personal challenge. It took everything I left in me for the day, but I had just finished lap 24 as my timer went off. I was proud of myself, but I got someone else to double-check and count my beads, in case I was mis-counting. Definitely 24 laps in 20 minutes. Ah, but nobody's checking my chart and putting stars on MY new personal bests. I will have to just reward myself.

I also had to stop by clinic today for a mishmash of HepB booster shots, talking with my pre-transplant coordinator (Kay Raburn), signing consent forms, and getting waylaid by another blood draw. Apparently my WBC is high. This, actually, is keeping me from getting listed. FML. If it doesn't go higher, I'm told, I could be listed next week. And if it does? A few weeks of antibiotics? Delayed listing? Come on, immune system, don't fuck me now!

I got home very tired, but happy to see my sister Rebecca. (Family is coming in this weekend for an early Thanksgiving! So perhaps it is good that I for sure won't be transplanted until after this get-together?) Once home, I discovered a text message from Christy thanking me for visiting and how she didn't want me to leave. Shortly after, a FB message from my old classmate and fellow Tisch mafia Olga Maslova saying her family asks for updates on me daily. Then, just after dinner, I opened up email and found my CF doctor in New York checking in on me. And even as I'm typing this, a very dear friend of mine in D.C. just texted to find out how things are going.

The contrast is shocking: on one hand, I float in and out of rehab, putting in my workouts, notching better and better scores, but the people who should have eyes on this don't - or at least not that I'm aware of... And on the other hand, there is a cloud of contacts out there, just on the other side of this screen, who very much have eyes on my situation. On ME. People beyond my immediate family. Outside of the classroom, I'm not used to being the object of attention, but I'm coming to realize a lot of people are following my progress closely, one way or another. It touches me very deeply and I'm grinning ear to ear, even if you can't see it behind this mask.